A neat story and my MOPS talk

I was recently asked to sit on a panel for our MOPS. The topic was "courage to face your mom fears". There was an adoptive mom, a working mom, a blended family mom, and then me. Special needs mom ;) I thought I would share it here on the blog since it's been awhile and then share a really neat story about Leila from the other night.

Yesterday I cut about 3 inches off my hair and then dyed it darker again. I was giving Leila her bath and she kept scripting this scene out of "Monsters vs. Aliens" and I thought it was funny because she hasn't watched that movie in a long time. So I was thinking what is she trying to tell me? She just kept repeating it over and over again. And then I thought I look like the main character, Susan, before her hair goes white. I have the same cut and color now! So I said, "Leila, do I look like Susan?" and she said pointed at me and said "You're her!". What?!? Leila has had lucid moments before but rarely in front of me. Mostly with her therapists or at school. It was so SO SO AWESOME. I just relish in those moments!

So here is my talk that I gave. You get to read it, without hearing my cry or blubber through it. Lucky you!

I admit I didn’t have any fears about being a mother before I had kids. Being a mom was something I had dreamed about for as long as I can remember. The whole idea of being a mommy is very exciting, right? 7 years ago, when I was pregnant with our second child I had no reason to be fearful of being a mom again.

 

So, I have a 9 year old, Lucy, a 7 year old, Leila, and a 2 1/2 year old, Lily. Our Leila is on the spectrum. When Leila was 2 1/2 she was diagnosed with Autism Spectrum Disorder and our world got turned upside down, and my plans for the present and the future changed and that’s when the fears started flooding in. In the beginning, the fear presented itself as anger and anxiety. Why us? Why Leila? Will Leila transition to a regular classroom? Will Leila ever hold a conversation? Will Leila ever look at me or say my name? On and on and on. In the beginning I also did not support myself very well and I didn’t have a close relationship with God. So when these fears started and I questioned my abilities and questioned God’s intentions you can imagine I was in a very, very bad place. These past 4 1/2 years have been a continuous roller coaster of ups and downs, progress and regression, happiness and pain and the ultimate growing and learning experience. So revealing my fears is a very personal thing. I don’t often reveal all my layers… ask my girlfriends… but I think my fears are something that all moms have in one way or another. Mine just have another layer behind them.

 

In the beginning and throughout Leila’s life so far these are the fears I have had and sometimes still face:

 

I fear I’m not doing a good job and that I’m not doing enough. When you have a special needs child there is always something new you should be doing or trying to help your child. I cannot think of a community of special needs parents more divided… new diets, new therapies, new medicines, you should’ve done this; you shouldn’t have done that… Being a mom is hard in general. Add special needs on top of that and your job gets extra hard. My “boss” can’t have a conversation with me beyond her very basic wants and needs. So I do everything I can on my side to help Leila and beyond that I give to God. Because God does not give special children to special people. God gives you the child that is meant for you. My Leila is a beautiful, wonderful child of God and he reassures me that simply being her mother I am enough for her and enough for him.

 

I fear for Leila’s future. One of the most frustrating parts of having a child with special needs is that they are so unpredictable, or at least mine is. I can predict that Lucy will more than likely graduate with a high school diploma, go to college, get married, have babies. With Leila I don’t know. I can tell you what I hope for her and that is that I hope for her the same things that Lucy will have. Will that happen? Right now my answer is simply no. Right now Leila is not on a path to have those things. Will that change? Maybe. Right now I must take comfort in the fact that Leila’s future is not in my hands. Her future is in her hands and the hands of God. I can only take Leila so far. The rest is up to her and the grace of God. My hopes for Leila are endless and I believe she is capable of a lot. God shows me this every time I underestimate her and she proves me wrong. Romans 15:13 says…
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. (NIV)

 

I fear I will always battle my will to control and not trust in God. Trusting in God is hard for me. I have control issues when it comes to my Leila. As a mom it is my job to fix things. Got a boo boo put a band aid on it. But I can’t fix or control Leila. One, well, because Leila doesn’t need fixing. Two, I can’t control Leila or her life. Don’t get me wrong I can in a certain way… and I can control her surroundings to a certain point. But ultimately it’s not my job to control Leila. It’s my job to guide her and it’s my job to love her unconditionally. I love my daughter so fiercely that when things don’t go as I anticipate (which is quite often) I tailspin into doubt, fear, and mistrust in God, it is quite simply my first instinct. However, through the years I have slowly learned (and still learn) that I must, must trust in God. I’ve learned that the power of prayer is amazing and it doesn’t have to be a beautiful eloquent prayer for God to hear me. I’ve learned that no matter how many times I mess up God believes in me. Because he wouldn’t have chosen me as Leila’s mom unless he thought I was the best fit for her. In the end “I want to be a woman who overcomes obstacles by tackling them in faith instead of tiptoeing around them in fear.” And I do. You don’t want to mess with this mama bear.

 

I fear you will judge me. I get told a lot, you are so strong, I don’t know how you do it, I can’t imagine.  Well, I’m not strong half the time, I don’t know how I do it either, and no, you can’t imagine… just the way I can’t imagine living your life. I fear you will look at Leila and see a bratty 7 year old. Because you see Leila’s autism is invisible to the unknowing eye. She is a gorgeous little girl and you wouldn’t know something was up unless you looked closer. If you looked closer you would see she doesn’t make eye contact really. You would see all her dollies that she brings everywhere for comfort (naked Barbie dolls too, awesome), you would see she can’t answer my questions. You would hear a voice that knows no difference between inside and outside. And I’m afraid you won’t see those things and judge the fact that a child as big as Leila is freaking out because I won’t let her bring in 10 dolls, only 3. Or, you’ll see me struggling to walk (or carry) Leila out of a situation and you’ll stare in disbelief that a child her age is acting so uncontrollably. So how does God help me through this fear? By surrounding me with friends that don’t care that Leila is different. By giving me friends that when I tell them my fears they are there 100%. They don’t leave and they don’t judge. They are a direct  reflection of God’s love for me. They are my people and God placed them in my life because he knew they where right for me. Just like he placed Leila and I together.  I also know that it doesn’t matter what people think. The only opinion that matters is his. Through him I gather strength whether that is weekly, daily, or by the minute.

 

So in the beginning the fears were stronger but with time they have dissipated and grown weaker. Only occasionally do they rear their ugly heads. Now that I am better supported both physically, emotionally, and spiritually I know I can step out in faith and trust for myself and Leila and not be fearful nearly as much. I now know the power of prayer, of a good girlfriend, and of God’s love for me and my Leila.

UPDATE

I wanted to send an update out to our family and friends that often ask how Leila is doing. A lot has happened over the past couple months and we have big changes headed our way yet again. To start from the beginning, and to be perfectly honest, Leila is not doing well in school. The first half of the year for Leila was great and she was making awesome gains. Then we had 2 weeks off for Christmas break. When we came back to school Leila started to regress in her behavior. She went from having “green” days were she kept her hands to herself, did not raise her voice, stayed with her class and within school/playground boundaries to constantly tantruming (kicking, hitting, screaming, throwing, hitting her head), removing her shoes and clothes, running away, and having to do the majority of her work in the hallway separated from her class. We had her IEP (Individual Education Plan) in February and it was clearly evident that Leila’s behavior was blocking her from the curriculum and slowing down her learning. When her days started to become only “orange” and “red” or “bad” and “really bad” I requested to have a functional behavior report done. The report basically requires the school behaviorist to figure out why Leila is tantruming. The report required something like 30 hours of observation and data taking… that’s a lot. They also were assessing whether or not a one on one aide would help Leila as well.

 

Things came to a head the week before Chris and I left for vacation. Leila had decided to take her shirt and shoes off and run around the playground at lunchtime and away from her aides. I was called by the principal because it was considered a safety issue and they wanted to make me aware. Right. I was desperate at that point and considered pulling her from school but instead decided to start calling people. I started with one of the program specialists at the district and through my tears I think she took pity on me, gave me some useful advice, her cell phone number and told me to call anytime. Then I called an advocate. I told her what was going on, that the program specialist mentioned moving Leila to a private school specifically for children with special needs and that this was new territory for me and I was scared. She told me she could help us and did a lot of research on her end to find out as much as she could about Leila. When we all met to review the functional behavior report the results were that Leila was tantruming because she didn’t want to do what they were requesting (duh) and was very averse to any kind of transition, whether that be within the classroom or out of it. They suggested at that point that Leila would benefit most from a private school were they had the ability to work within her tantrums and wait her out or remove her to a safe room. Leila’s current teacher, Heather, is supposed to be the best in the district (and I can truly say she is) and if Heather couldn’t control Leila then no one in the district would be able to. From there they sent out a representative from the proposed school to observe Leila and once she gave the okay we went out to take a tour of the school in Hayward.

 

Chris and I were not prepared for this tour. The school had been talked up so much to us and how great it was going to be for Leila that I formed this picture in my head of how it would be and that was not a good idea. The school is right by CSU East bay so it is about a 35 minute drive with minimal traffic. The school was once a public school that was shut down and the Spectrum School moved in. So it is old. And ugly. The school goes all the way up to the age of 22, because they have a transitional work program for 18-22. There are 90 students on campus only 10 of them being girls. The students range from severe to mild. The classroom suggested for Leila has 12 kids in it and 7 staff. When we walked into the classroom we were greeted by a high functioning girl (who is aging out this year) but in the corner was a boy tantruming. I immediately noticed they were cutting out and coloring an Elmo and then I keyed in on the severe children. For example, one was using a chewy tube. These were children were you could see their autism, not like Leila were you wouldn’t necessarily see it at first. I then started panicking and shutting down and didn’t really see the classroom only a few kids. When we got back to the Assistant Director’s office I had a full break down/panic attack that these were the kids Leila would be going to school with. I don’t consider my child severe; I also don’t consider her high functioning. I think she sits right on the cusp of high functioning and if she could just have expressive language she would be on the higher end of the spectrum. Lots of things were running through my mind. I don’t want her exposed to these children, they are not peer models. I don’t want her picking up bad habits. How are they going to encourage her language? How are they going to academically challenge her when there are severe children in the classroom? Just outright panic that this was where we were sending her. Then doubt. Was Leila this bad and I’m in denial? I know she is a certain way at home and a whole different child at school. Did her behavior really warrant this type of environment? Would they be able to give her the intensive intervention that everyone is telling us Leila needs? Did I fail Leila? By sending her to this school am I a failure to her? Well I feel like it dammit. I’ve never been in denial that Leila has autism but I am in denial that this is where she needs to be. The whole thing was complete culture shock and devastating… there is more I could type but it’s not worth the typing.

 

We had one day to process all this before I went to the last IEP yesterday to “sign” that Leila would go to school there. We ended up only agreeing to a trial summer period of 5 weeks. I know that the school environment is not working for Leila. She is not learning and is not successful so keeping her in any public school is not the best option for her right now. Putting Leila in this new school is not the best option yet either. We asked for all options to be open at the end of summer to see what other schools Leila could possibly attend (there is not a lot out there without a significant drive). Leila’s current teacher, Heather, and her current behaviorist both agreed to go out to the school to check on Leila over the summer to see how she was doing. I also have the option at any time to pull her from summer school (it is not mandatory). I am going back to the school to take a tour again and really walk into the classroom and look beyond the students and more at the schedule, staff, and curriculum. I still feel sick to my stomach. And I hate, absolutely hate, that she will be all the way in Hayward. This transition is hard for me. Probably harder then when I sent her off to school full time at age 3. My friend told me today that sometimes you have to take a step back before you can take a step forward. This is clearly a step back for Leila but I hope with all my heart that this is what she needs to move forward. She is so smart and such a fun loving girl it has been very hard to watch her struggle in school. She could be so much more if she would just get out of her own way. Our goal is to get her back at the district. I hope it happens sooner rather then later.

Saying Goodbye and other updates...

Saying Goodbye

This has taken me awhile to write. My dang pregnancy hormones are making it extra hard to get through…

 Two weeks ago I got the bad news that our ABA supervisor Natalie was leaving PCFA. Natalie found a job closer to home with less hours and more money so she could not pass up the opportunity. I was devastated when I got her email. Natalie had been with us since Leila was 2 1/2. She saw our house when Chris and I were sleeping on an air mattress in the front room during our addition/remodel. She helped me to get through all the initial feelings of guilt and sadness that came when Leila was first diagnosed. Natalie and I had some times where we butted heads but ultimately she was a great support to me when I needed someone who would understand the frustrations of raising a child with autism. She listened to me when I would doubt myself over everything from how many hours of therapy Leila should have, to what I should feed Leila, to what I should do when Lucy was acting out. I miss her. Natalie leaving really doesn’t have that much of an effect on Leila. Leila’s therapists will stay the same and that is really all that matters. Natalie never ran a daily session with Leila she just oversaw her program and visited with me once a week while she updated Leila’s binder. I really looked forward to her visits and often times when Leila was in early intervention, and I was stuck in the house for over half the day, she was one of the few adult conversations I had. I gave up a lot when Leila went into early intervention. We lost the playgroup opportunities and play dates with friends that stay at home mom’s depend on for social interaction. It was a tuff transition and Natalie helped to get me through it. I will miss seeing her weekly and I will miss our chats. She did give me her personal information though and I hope we stay in contact.

Last week I received an even more devastating blow. Leila’s teacher, Nikki, informed me that she is moving back to Texas at the end of the school year. Nikki and I have recently formed a friendship outside of school. I was so excited to finally be making a friend of my own that I hadn’t met through someone else. It was nice to have a friend that truly understood what having a child like Leila means but then also have other things in common too. It’s been hard for me to make new friends since Leila’s diagnosis. I find it hard to trust people and feel comfortable enough with to bring Leila to someone’s house. I didn’t have to worry about this with Nikki. Nikki’s husband is moving back to Texas for his job but she has agreed to stay till the end of the school year. I know this is quite a sacrifice to be separated from her husband and take care of her 3 children by herself. So I’m just sad lately, sad to be losing my new friend and sad for Leila to lose this great person in her life as well. Because Leila has also formed an attachment to Nikki too... she loves Nikki very much, gives her hugs all the time, calls her by her name (probably more then she says mine), and has some separation anxiety from her. You could say Nikki is like a second Mom to her since she spends the most time with her besides me. I feel bad that Leila will lose this relationship and hope and pray that her next teacher is just as awesome. I know everything happens for a reason and I’m very thankful to have had Nikki in our lives for this brief period of time. I will really miss her.

Otherwise Leila is doing great. Her in home ABA therapy is finally going really well, her new supervisor works really, really well with her. In fact, she is probably a better fit for were we are at now in Leila’s therapy. Leila is interacting more and more with Lucy and their new thing is fighting over sharing the ipad… like a normal sibling interaction! It’s annoying to have to break up but nice to see them actually acting like typical sisters. We have about one more month of school left before summer vacation and I don’t plan to enroll Leila in summer school this year. Even though the other LASS class teacher is teaching this summer I cannot trust the aides they hire to work with her. They are not the normal aides… basically hired babysitters for the summer. I cannot risk having Leila regress again like she did last year. So Leila will just have ABA therapy over the summer before she goes back to school again in August.

Which brings me to a new battle in keeping Leila’s therapy coverage on track. Recently, California passed a law requiring that health insurance fund ABA therapy. As of July 1^st your insurance must work with you to fund therapy or it’s basically against the law. I think this is great, no, I think it’s awesome! I think a lot of people will really benefit from this. However, this has become a HUGE pain in my butt. Our ABA coverage, which for 6 months costs upward of $30,000 is currently funded by the Regional Center of the East Bay. Well… now the Regional Center is telling me that Leila will only be covered until June 30^th. After that they are not legally responsible to fund Leila’s therapy – this will be our health insurance’s (Kaiser’s) responsibility. What this means is that there will more than likely be a large gap this summer in Leila’s therapy. Currently, our ABA provider, PCFA, is not a vendor of Kaiser. So, unless they beat feet to become one (and I don’t how that works) we will have to start all over with another ABA company doing all new assessments. Since I am not enrolling Leila in summer school she potentially will have a 2 month break in any kind of therapy… which is not good. Leila thrives off of a solid routine and ABA therapy. So we must either float her ABA therapy through July (which would be quite expensive) while hopefully Kaiser approves our funding and we start our new assessments or I must fight with the Regional Center to keep her ABA covered through July. I am okay with Leila having the month of August off. She will be okay with a basically 3 week break before school starts again. Either way I am not really appreciating this new law right now it’s only causing me stress.

 We are still trying to fundraise for our North Star Dog… read our previous blogs to learn more about it. Thanks and I will try to update the blog again soon!

MOPS Devotional - My story of learning patience and raising a child with autism

So, I was given the opportunity to speak at my MOPS these past two weeks. I had thought of posting my devotional to the blog for people to read but then I thought it would mean more if I actually read it. Probably could have touched up the make-up and worn a more flattering shirt but you know it's late, I'm pregnant and... whatever :)
Obviously, this is from my point of you and while it may seem at certain points when I am talking like I  have low hopes for Leila's future this is just NOT true. Chris and I have every hope and belief that Leila will grow to be an independent, beautiful, smart, confident young woman. Her speech and eye contact continue to improve and she has recently shown great interest in copying and wanting to be with/follow Lucy. Lucy does not know what to make of this exactly and it's been a struggle to explain to Lucy that this is what little sisters do... bug their big sisters. Lucy's response was "Oh, I didn't know that" well she is getting a crash course in it now!! I suggested she call and talk to my older sister Alisha and ask her what it is like and she said that was okay she didn't need to call :)
We are 21 weeks pregnant now with a third girl and everything else is going well. We are looking forward to suprising the girls with a trip to Disney Land next week and enjoying the parks through their eyes.

North Star Foundation Puppy for Leila

Dear Family and Friends,

We write to ask for your support in a very important mission – to sponsor the placement of a service dog in the Patrick Family. Our daughter, Leila (4 years old), has autism and was just recently cleared for the placement of one of the service dogs bred and trained by the North Star Foundation. Her assigned puppy will be born later this spring; however, in order for the placement to occur, it is crucial that we raise the funds necessary ($5,000) in the coming weeks. The high cost of placement is due to the nature of the intensive and specific training each North Star dog receives, along with the considerable follow up services they provide.

North Star Foundation is a nonprofit organization dedicated to helping children with special needs through the use of well-bred and trained assistance dogs.  They have been incorporated for ten years and have made over 100 North Star placements in homes of children who face social, emotional and educational challenges around the country. Over half of the children they serve are on the autism spectrum. Their nonprofit work with children on the autism spectrum was profiled in Autism Spectrum Quarterly’s spring edition (www.asquarterly.com).  You can also learn more about North Star by visiting their website at www.NorthStarDogs.com and/or viewing a video at http://www.youtube.com/profile?user=northstarvids.

Please consider making a donation to support the placement of Leila’s service dog. Your donation to the North Star Foundation can be applied directly to her placement and must be received by May 31st . All donations to North Star are tax deductible (EIN # 06-1589586). Your check or money order should be made out to North Star Foundation and you should put Leila’s name in the memo line on the check so that they will apply your kind donation to support Leila’s placement. You can also make a PayPal donation via the donation link on their website at www.NorthStarDogs.com; there will be a screen to indicate your donation is meant to support Leila, but if you can’t find it simply send a separate email to Patty Dobbs Gross at northstarfoundation@charter.net to inform her of your donation. Please also let us know of your donation so that we can properly thank you for your support.

We are extremely excited about the immeasurable benefits Leila will receive with the placement of a North Star assistance dog in our family and we really appreciate your support to make this happen. We’ll certainly keep you informed of Leila and her puppy’s progress in the coming months! Please feel free to contact us if you have any questions: Chris and Jessica (925) 292-1352. Hope you and yours are doing well and hope to hear from you soon J

Thank you in advance for your support,

Chris, Jessica, Lucy, and Leila                     

Lots of updates...

It’s been awhile since we posted a blog and quite a lot has happened in that time. We are now half way through the school year.  Leila is doing really well and is in ABA therapy Monday through Thursday from 2:30-4:30. I chose not to have therapy on Fridays so that we could have a break. It’s a really long day for Leila so it’s nice to come home on Fridays and not worry about being ready for a therapist to come over. Leila is using her speech more and more (when necessary) and her eye contact has greatly improved. She even uses my name “mommy” from time to time without being prompted. She regularly uses Chris’s name to get him to play with her and occasionally will even say Lucy’s name to get her to play as well.

I called an IEP last month to get Leila more speech at school. So she now has an additional 20 minutes of small group speech therapy to help with her articulation of large words. She was tending to start a word correctly and then not being sure of how to say it made up her own gibberish to finish it. She was also mixing up sounds. I am able to go into her classroom every Friday and observe her in two of her sessions as well as circle time and her first recess. I have seen some things I don’t like and Leila’s teacher is always receptive to my ideas and suggestions. Leila really loves school and runs from the car to school almost everyday. I’ve formed a friendly relationship with her teacher Nikki and really appreciate all she does. Especially since the other LASS class lost their teacher over Christmas and has had subs ever since. I was told they finally hired a teacher and that she has 11 years of experience with special needs but no experience with discreet trail – which is ABA. Why would they put someone with no ABA experience in charge of a Language and Social Skills class?? I don’t know, but I’m glad it’s not Leila’s teacher. If it was I’d be calling an IEP and demanding she be moved to Nikki’s class.

Leila’s ABA had a rough, rough start (as expected) but she has settled into it and likes her 3 therapists for the most part. She is closing a lot of programs and they have established instructional control so we are getting ready to venture out into the public for programs on learning to walk with me in a store, stop when being told, etc. next Tuesday. We are also trying to set up supervised play dates (with therapists) with another boy from the other LASS class who’s Mom I’ve become with friends with on a Saturday hopefully. So that’s really exciting.

I also did some asking around and found out that the girl’s dentist has put children under anesthesia for teeth cleaning and x-rays. Leila had her teeth cleaned almost 6 months ago and it was just awful. She was so scared that she was screaming and choking. They tried their best to clean her teeth but just did not do a good job because of how upset she was. After being told twice by one dentist at the practice to just bring Leila in and have her watch other children get their teeth cleaned (Are you kidding me?!?) I approached the main dentist and told him “I know you’ve put children under so you cannot say no to me when I ask you to do this for me.” He said that normally because Leila is young he would say no but since we have a familial history of really bad cavities (Lucy had 6 at 4 years old and I’ve had cavities all my life) he would do it for me. Unfortunately, we have Kaiser so we cannot use the surgery center located next to the dentist office so we are paying out of pocket for the anesthesia, which is quite expensive. We feel it’s totally worth it though not to put Leila through any more pain and trauma from another teeth cleaning.

Last thing for Leila is that we were recently cleared to start fundraising to get Leila and our family a trained dog. I thought we could just get an older dog but that is just not possible with Leila. She often makes dogs nervous and because she is often unpredictable we need to have a very calm dog that has grown up in our household. I found North Star Foundation on the internet almost a year ago but it just wasn’t the right time for us to commit to a dog. We’re now ready for a dog, especially the girls, and feel the dog will really help Leila to be calm and ease her stimming. I chose North Star because of their philosophy of involving the entire family in the training and transition of bringing the puppy into our house. They also are on the cheaper side and allow children as young as 3 to have a dog. Most foundations require the child to be 5 years of age. So when I say cheaper I don’t mean like $200.00… I mean like $5,000.00. Yep, $5,000.00. That’s a lot of money. However, because of the extensive training and the follow up services (and even flying the puppy from Connecticut to California) our puppy will be worth a lot of money. So we are starting to fundraise and will be sending out a letter to friends and family and posting it on Facebook in the hopes of getting some financial help!

So our most exciting news for this post is that I’m 14 weeks pregnant. This is something that Chris and I have been thinking about since Leila was probably 1 year old. However, Leila was a wild and crazy 1 year old – I mean she started walking at 9 months old (well one week before she turned 10 months). Then when we started noticing problems at 2 years old so we postponed, then she was diagnosed at 2 1/2 so we postponed. Then over the last year and half we kept pushing the idea back waiting to see more and more improvement in Leila. Chris kinda got sick of me talking about it all the time so we made a deal to not talk about it till my 30^th birthday. So on my 30^th birthday I brought up the subject again and we decided that we were ready. There were a few things I wanted to do before getting pregnant and one of those was running in the Nike Women’s Half Marathon in October. So I beat my previous flat course half marathon time by 3 minutes (Nike is notoriously hilly) and that was a pretty good feeling. We found out we were pregnant a couple days before Thanksgiving. We are very excited! We’ve put a lot of thought into this decision and have thought out all the possibilities and what this implies for our family. We are well aware that we will now be outnumbered and that it will be difficult at first but we are up for the challenge. Basically, I could give you a thousand reasons why we should not be pregnant but all I can say is that I wanted one more baby, that I didn’t feel done, and that my heart has room for one more beautiful child. Of course I am scared but I truly believe everything will be okay.

We enrolled in Kaiser and UC Davis’s EARLI Study. This study will follow me through my pregnancy with interviews, blood work, urine tests, a dust test of our house and lots of questionnaires. Like about what I’m eating, my physical activity, my mental health, etc.  They’ll also take Chris and Leila’s blood. Then when the baby is born they will take samples of the cord blood, meconium, and even my breast milk. They will also provide assessments for the baby at 6, 12, 24 and 36 months of age to make sure he/she is hitting all milestones and helps us to notice red flags for autism. Lucy is incredibly excited and hopes to have a brother since “she already has a sister”. Obviously Leila does not understand what is going on but I’m hoping as I get bigger she gets more curious.

That is all for now… I’ll do my best to keep the blog more updated but now that I’m done for the day at 9:30 a lot doesn’t get done J.

Watch the video and an update on Leila

The video above has a very powerful message so if you haven’t watched it already; I encourage you to watch it, right now. If you want to know what it’s like, if you want to know what a parent of an autistic child goes through and deals with he pretty much nails it.

Leila started school this week and her transition into a new classroom, with a new teacher, has gone really well. She had a rough time Tuesday when we dropped her off but her teacher said she was fine after about 10 minutes. She has two returning aides and two new aides. I really like her teacher, Ms. Nikki, so far. She is very protective of Leila and has said she “just loves her”. Who wouldn’t? J I’ve already seen small improvements in Leila’s eye contact and use of speech. But also seen the return of two old stims… taking a kitchen utensil (or anything she likes at that moment) and waving it in front of her face and taking sharp intakes of breath. So I plan to ask her teacher and our new ABA supervisor what I should do to discourage these old “new” behaviors.

This brings me to ABA therapy. Two weeks ago we completed all our assessments and met our new supervisor, Patrick. I like him a lot too. I let him know that I would not stand or hesitate to call him for therapists that do not call to tell me they are late or not coming. I also said I would not hesitate to call him if I thought a therapist didn’t “fit” right with Leila; that I would give them two weeks and if I still didn’t think they were right for Leila I would request they not come back to our home. He agreed with everything, told me to call him for whatever and whenever. I think we’ll get along just fine. J I finished all the paperwork (23 pages of paperwork, ugh!) and now we are in the waiting phase. Waiting for Patrick to write his final report and waiting for the Regional Center’s approval. Leila will most likely start therapy again in the middle of September/early October. Her day will be as follows: 8:30-1:30 school, maybe a 1 hour break, then ABA therapy from 2:30-4:30. That’s a long day for a 3 year old, but ABA works so we are doing it. I won’t be putting Leila in any other activities like speech or occupational therapy because she gets OT twice a week at school and I’ve been told by Leila’s previous speech teacher and Patrick (ABA supervisor) that speech therapy won’t exactly help Leila. Meaning, when Leila echoes or initiates speech her words are very clear. She does not need help annunciating or forming words. She needs help unlocking them from her brain. A speech therapist can’t really help with this.

I’ve been forcing Leila to use my name when asking for things lately in the hopes one day she’ll actually use it on her own. The day that happens I will update the blog with a simple “she finally said it”. I will be very happy the day that happens!!